March 19th

It was a steady day overall. Both boys continue to be closely monitored.

Colton:

Colton remains stable on paralysis, and they’ve been able to slightly wean some of his support. He is still not eating and is receiving nutrition through his IV.

His belly looked a little concerning this morning, so they did an X-ray, which showed less bowel gas than expected. Labs showed some low electrolytes and low platelets, so those are being watched closely.

Declan:

Declan remains stable and comfortable on the ventilator. He needed a little more oxygen this morning, and they adjusted his breathing tube slightly to improve positioning.

He is still not eating and remains on IV nutrition. The GI team is recommending continuing his current support and hopefully starting very small feeds early next week if he continues to do well.

Overall, We’re taking it one step at a time and are so grateful for how closely they are both being watched. So much so, Mom was able to come home for the night for a little 24 hour break.